Resources for Children with Life-threatening Illnesses

Make-A-Wish Foundation: This is the nation’s largest wish-granting organization, giving hope, strength, and joy to children with life-threatening medical conditions. 

Dreams Come True: This organization grants wishes to children with life-threatening illnesses between the ages of 2½  and 18. 

Camp Boggy Creek: Located in Eustis, FL, this year-round, free camp works in association with the Hole in the Wall Gang Camp, and is open to children with cancer and blood disorders between the ages of 7 and 16, and their siblings. 

Camp Rap-a-Hope: This free, weeklong summer camp in Mobile, AL, is for children with cancer, ages 7 to 17.

Blood disorders are diseases of the blood including:

• red blood cells, which carry oxygen to the body’s tissues
• white blood cells, which help your child’s body to fight infections
• platelets, which work to help your child’s blood clot properly
• clotting factors, proteins found in blood that help stop bleeding after a cut or surgery

Types of Red Blood Diseases We Treat

• Iron-deficiency anemia: low iron levels that lead to decreased hemoglobin, which helps carry oxygen through the blood to all parts of the body 
• G6PD deficiency (also called RBC enzyme abnormalities): an inherited condition in which a child lacks an enzyme that protects red blood cells
• Hemolytic anemias: the abnormal breakdown of red blood cells
• Sickle cell disease: a common inherited disorder caused when the red blood cells become sticky and oddly shaped
• Thalassemia (Cooley’s anemia): a genetic condition in which one of the two proteins that help make up hemoglobin in red blood cells is lacking
• Neutropenia: caused by a decreased amount of white blood cells that may be caused by disease or chemotherapy treatment
• Anemia: due to a chronic condition such as kidney disease, cancer, or lead poisoning    

Types of White Blood Cell Diseases We Treat

• Neutropenia: a condition caused by a decrease of white blood cells, as a result of disease or chemotherapy treatment
• Leukemia: a cancer of the blood that develops in the spongy center of some bones (called the bone marrow)
• Lymphoma: a blood cancer that develops in your child’s lymph system and includes two types: Hodgkin and non-Hodgkin lymphoma
• Myelodysplastic syndrome: blood cancer affecting the bone marrow

Types of Platelets Diseases We Treat

• Thrombocytopenia: a condition caused by too few platelets and results in abnormal bleeding
• Thrombocytosis: a condition caused by too many platelets, which can lead to clots in the blood vessels
• Idiopathic thrombocytopenic purpura: caused by a low number of platelets that results in abnormal bruising and bleeding
• Qualitative platelet disorders

Children who need to be admitted to the hospital are cared for at the Thomas Jenkins Oncology Unit at Sacred Heart Children’s Hospital (one of the many health care providers we partner with to extend our Nemours’ quality of care) named after a Nemours oncologist, for his dedication and research to children with cancer.

Also, when your child needs chemotherapy treatment and other infusion procedures such as a blood transfusion, our team of pediatric hematology specialists will care for your child at Sacred Heart’s Pediatric Infusion Center – geared in a pediatric setting with specially trained hematology and oncology nurses.

Our pediatric hematology experts are knowledgeable in treating children with hemophilia, an inherited, uncontrolled bleeding disorder. Children diagnosed with hemophilia either lack or have a low supply of proteins in their blood called “factors:” factor VIII or factor IX. These factors help your child’s blood to clot after an injury, preventing excessive bleeding.

There are three main types of hemophilia:

• hemophilia A: the most common form, caused by a lack of blood clotting factor VIII
• hemophilia B: caused by a low supply of factor IX
• von Willebrand disease (vWF): this type of hemophilia causes prolonged bleeding  

Symptoms of hemophilia include:

• excessive bleeding
• bruising easily
• joint bleeds, causing chronic pain, immobility
• bleeding into the muscles (causing swelling, pain, and redness
• bleeding from injury or in the brain (brain hemorrhage)

Treatment for hemophilia depends on your child’s severity and may include:

• factor concentrates
• blood transfusions
• surgery
• limiting contact sports
• immunizations administered under the skin rather than in the muscle

• specialized blood testing and analysis in our state-of-the-art lab
• blood banking, a process that takes place at a lab at Sacred Heart Children’s Hospital to ensure donated blood is safe before it’s used for transfusions
• transfusions, a procedure in which your child is given whole blood or one part of it through an intravenous (IV) line
• bone marrow transplant, a procedure that destroys cancer or abnormal cells with chemotherapy, and then re-introduces healthy donor stem cells in your child’s body

Our family-centered approach focuses on your whole child, not just the disease. Helping to guide you throughout your child’s diagnosis and treatment, our highly trained team includes an entire collection of health care providers and support service members:

• board-certified pediatric hematology doctors
• specially trained pediatric hematology nurses
• licensed clinical social workers
• procedure scheduler
• medical assistants
• registered dietitians
• Child Life specialists from Sacred Heart Hospital, who provide supportive and educational services, and activities using art and music therapy, to help promote positive coping strategies and understanding of the entire hospital experience

Other specialists who may be on your child’s care team include:

• radiologists
  
• psychiatrists and psychologists
  
• endocrinologists, who help treat problems relating to the endocrine system or glands
• nephrologists, who treat problems with the kidneys
• neurologists and neurosurgeons, who treat problems with the brain and nervous system
• pulmonologists, who treat problems with the lungs
• gastroenterologists, who treat problems with the stomach
• ophthalmologists, who treat problems with the eyes
• infectious disease specialists
  
• orthopedic surgeons
  
• pediatric surgeons
  
• ENT specialists
  
• genetic specialists
  
• urologists

In addition to specialized treatments, we offer complementary services to help kids feel better physically and emotionally, such as:

• Pet therapy: Weekly visits from specially trained dogs offer children and families a calming, loving distraction from treatments.
• Beaded journey: This is a special project in which children with cancer receive a special bead that acknowledges a milestone throughout their journey with cancer. Volunteers come to our clinic with sewing machines and help the children sew on the beads to create fun pillowcases, puppets, and other keepsake items.
• Gulf Coast Wings of Hope: This organization provides recreation and family support activities for children with cancer and blood disorders.

We may know how to treat your child’s condition, but no one knows your child better than you. That’s why we want you to be an active participant in the decision-making process for your child’s treatment. We’ll explain every step in easily understandable terms, present all options (including alternative methods), and invite your input.

Whatever you’re facing, know that at Nemours we do whatever it takes to give your child the very best, most compassionate treatment possible. We treat every child as we would our own — your child, our promise.